Living with our adult son with autism and epilepsy. Sharing lessons learned from life around me.

The Beauty IN The Beast

My phone rang this morning, and there on the line was my very dear friend, Wendy. I knew right away from the sound of her voice that something was wrong. It was Elijah, Wendy said, her tone flat and exhausted. He had run away again, on his bicycle, and had almost gotten on highway 24. Somehow Wendy got him back, although we didn’t go into all the details of that.

Elijah, who turned 20 years old yesterday, suffers from the worst form of Epilepsy there is. He has horrible seizures that often require oxygen, and sometimes require strong drugs to just stop the awful seizing. Those drugs may help to save his life, but they also cause his life to be miserable after the seizures stop. Life saving drugs like that are also life changing drugs because of the terrible behaviors that usually follow their use.

It’s an awful catch 22……a dreadful dilemma for Dan and Wendy, his loving parents. And for Elijah……and the whole family…….they live between a rock and a very, very hard place.

Seizures cause changes in the brain. These changes can contribute to behaviors that defy reason. Drugs to control the seizures often have the very unwelcome side effect of causing even more behaviors. Add to all this the sometimes necessary brain surgeries that children like Elijah have had…..multiple brain surgeries…..and the mix is indeed toxic when it comes to the brain being able to make the connections that you and I take for granted.

Gary and I face these same dilemmas with Aaron, trying to find the balance between seizure control and quality of life……both Aaron’s and ours. Yet preventing or lessening seizures is of paramount importance. It’s literally a life or death situation.

But so are behaviors, sometimes, when those behaviors can be as dangerous as Elijah’s.

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

No disease or syndrome of ANY kind is easy to bear. But some are, sadly, easier to explain.

I do believe that explaining……let’s just say it……bad behaviors…..is tremendously embarrassing and frustrating to us parents who find ourselves having to do it over and over and over.

We get “the look.”

We get the questions, spoken or not.

We get “the talk” from teachers or our friend’s parents.

And sometimes we DON’T get…..the party invitations…..the friendships……the understanding…….the listening ear……the sympathy, that we so desperately need. That our special children desperately need.

It was just last year that someone came up to my car window, and with great exasperation, said, “Can’t you DO something about Aaron?”

I looked at her in disbelief and said, “Do you have ANY idea what all we have been doing with Aaron for over 30 years?!”

Today I gave our Aaron a fun day after his four days in the hospital. We went to see Beauty and the Beast. Aaron wasn’t totally sure that this was prime movie material, but the thought of popcorn and time with Mom won him over.

As the movie progressed, I was pretty amazed at Aaron. He was completely enraptured by this movie. He was so still and quiet, except for the rubbing of his hands together that is just so Aaron. He rubbed his hands softly, unless there was a very exciting piece of action. He ate his popcorn but didn’t even want a second tub.

As I glanced at him during the movie, I saw him smiling. His eyes were big and focused totally on what was taking place on the screen. He loved the characters and the drama and most definitely the music.

But the character he loved the most was the Beast. Aaron was registering in his mind every nuance of the Beast……his anger at the first, his softening as the movie progressed, his smiles, and his joy as he fell in love with Belle.

Aaron at one point simply said, “I love this movie!”

And when he said it again, a little later, Aaron laid his head on my shoulder. It was pretty incredible.

Aaron wasn’t the only one, though, that was completely taken by parts of this love story. I was, too, but for reasons that went far beyond Belle and The Beast.

I was looking at what can transpire when a Beast – or a person – is loved. Is truly loved and valued for who they are under their rough exterior.

Wendy’s sad and tired words played through my mind as the music played on the big screen. My own sometimes weary burden over our Aaron’s behaviors was heavy on my shoulders.

Elijah and Aaron are so much like the Beast in some ways. They can evoke a measure of disbelief in how they act and in what they say or do. They are at times unlikable, impossible to understand, and downright annoying.

But there is another side to them, and to so very many others with these same issues. A side that blooms under love and understanding, as much as possible. And when we, or others, can’t really understand we at least know deep down that many actions are beyond their control.

All of this was playing in my mind as the movie played today, with Aaron’s gently rubbing hands and big smile beside me. And it’s why tears rolled down my cheeks as the words of this song, Something There, burned into my heart.

There’s something sweet

And almost kind.

But he was mean and he was course and unrefined.

And now he’s dear,

And so I’m sure,

I wonder why I didn’t see it there before.

New and a bit alarming,

Who’d have ever thought that this could be?

True that he’s no Prince Charming,

But there’s something in him that I simply didn’t see.

Aaron and Elijah, and many like them, have so much more in them than we often see. They are wonderful and funny and smart and have so much to offer to the world……and the people…..around them.

They need what the Beast needed. They need the “something there that wasn’t there before,” as the Beast’s friends sang at the end of this song.

That “something” is love. Some days the love is harder in coming than on other days, but even when our boys aren’t being Prince Charmings, they still deserve as much love and understanding as possible.

Aaron and Elijah have lots more awareness than we realize. Aaron has always known who is real and who is not when it comes to how they react to him and interact with him.

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

He knows very well that the Beast loved Belle for who she was as a person. That’s real love.

And it’s the love our special kids need……the love for who they are, deep under all the medicines and conditions and labels and diagnoses.

I’ll be the first to say that it’s easier to write the words than it is on some days to live it out in real life.

But our kids will grow under unconditional love, some days more than others.

And all of us giving them real love…..not fake love…..will grow even more.

There truly is beauty in the beast, if we just love and look.

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Author: hesaidwhatks

I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.
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I love these boys so much and if I could trade places with either one of them I would in a second, no one really understands these type of children except for those who have a child like them, and to all others, tell them to give their opinion, ” only when they walk a mile in your shoes” and until they do, shut the hell up….love and hugs to all who live thru this 24/7….God Bless our Elijah, Aaron and the families…❤🙏💙✝🌹😍

Thank you for teaching me so much through your words, dear friend. There is nothing fake or shallow about you and your love for Aaron and others. I’ve never walked in your shoes but know that Our Great King and Father carries all of you.